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Abstract
Introduction British Paediatric Surveillance Unit (BPSU) promotes study of rare diseases and infections by orange card reporting system and subsequent questionnaire based surveillance. We conducted a study of surgically ligated PDA in preterm babies between September 2012 and September 2013. The questionnaire had 10 parts with a total of 43 questions to answer. 18 of these were generic questions and could have been answered by non-medical staff. The questionnaire was designed after balancing the number of questions against the completeness of the data required. The aim of this abstract is to outline some of the difficulties of such questionnaire based national surveys and possible solutions.
Results 531 cases were reported and questionnaires posted to the relevant Consultants. 10% of these questionnaires were not returned and similar percentages were reported in error (see Figure 1).
Multiple reporting occured in 96 cases – 83 of them were duplicates, 12 were triplicates and 1 case was reported by 4 different clinicians. Incomplete data was provided in 96 cases. This was less with multiple reporting ones 11/96 (11.4%) compared to 82/199 (41%) cases which were reported once. Multiple reporting thus helped us to obtain more information about the case. But this also resulted in some discrepancies in the reporting of 12 (12.5%) cases.
Conclusions In our experience, we felt that email correspondence was quicker and had a better response rate compared to paper correspondence. Division of the questionnaire into medical and non-medical parts could enable the clinician to concentrate on the relevant medical information and leaving the non-medical information to be filled in by administrative staff.
The longer the time that lapsed between the case being reported to the BPSU and the questionnaire being completed by the Consultant, the more incomplete was the reported data.
Improvements in data ascertainment might be possible in a neonatal project if the research team were able to access national databases such as BADGER system for named patients to improve the accuracy and quality of data.
This type of surveillance has great epidemiological and clinical impact. Identifying key issues and addressing them early can ensure high quality data is collected and disseminated.